A final note from the office

Some time ago, at a lecture I attended, the speaker said, “regardless of what is going on now, good, bad or otherwise; this too shall change”. I have never forgotten that statement, and it comes up often in many parts of my life. This is one of those times.

In late 1997, the wonderful people at our local Starbucks came to us, telling us, that they were going to do a fundraiser in support of the Gene Replacement Therapy trial that Jacob was going to participate in at Yale. And from that point, Jacob’s Ladder was born. Well, almost, kick in the support and guidance of our family and Bert Stitt, then The Canadian Foundation for Control of Neurodegenerative Disease, dba Jacob’s Ladder was born. Community.

The focus of the charity was to support some very directed objectives, and for that we needed to raise funds. As with the support of Starbucks, we reached out to our community, which at the time was primarily, young families, their parents and grandparents and the companies they worked for and supported. Everyone helped.

Operating on a shoestring, as we continue to do, we enlisted volunteers to run the organization in any way we could. I can remember vividly ‘receipt writing nights’, with 10+ people gathered around a dining room table handwriting donation receipts, stuffing envelopes and mailing them. That continued for many years until it became too onerous to service the needs of our ever growing donor base. Shortly thereafter, we automated with a proprietary software program (still in use today) developed by Dan Litvack, a volunteer. That automation, under the watchful eye of Bert Stitt and our volunteer auditor to this day, Harvey Taraday, helped us take the next step as a charity. We are forever thankful for their commitment and continued support.

That’s how we started, and to be honest, that’s how we grew. Community.

Along with all the growth, we still needed support, but this time we needed a real pro. Ellen, myself and our board could only do so much-so it was that fateful day, Nora Glass, a neighbour, came into our lives. Remember, ‘and this too shall change’, and wow, when Nora came along, did things change! She is, and always has been, that warm caring voice behind every phone call, every receipt and every newsletter over the years. Thank you Nora.

In all this time, the underlying premise behind Jacob’s Ladder continued; supporting incredible projects, accomplishing major milestones, with the community behind us all the way. That has never changed.

In fact, that community support and involvement is what drove us (Ellen and team) to develop more community centric events, like the Family Fun Days, The Jake’s Gigantic Gives, and more recently Rock with Jake and Jake’s Jams. These were designed with our community in mind, as they grew and their interests changed, we had to do the same.

Jacob’s lessons to us as a family, to our community were at the core of everything we did. And that was felt in every event, every newsletter and every communication we delivered.

Jacob’s Ladder developed into a conduit for Jacob’s voice and everyone was listening. We all strived to be kinder, more present and appreciative in today’s distracting world.

From Jacob’s Ladder, spawned Project Give Back, another values based organization run by Ellen and team, promoting strong community development in our future leaders within the school system. Spreading these messages and ideals through our young people has had a global impact as these new influencers develop a voice of their own on the world stage.

While Jacob’s Ladder, The Canadian Foundation for Control of Neurodegenerative Disease will cease operations on December 31 2019, almost 22 years after it’s inception, our values, our accomplishments, and our foundation will continue to be strong for generations to come.

To our board, to our donors, and most of all, to our entire community; your support, your guidance and most of all, your love has helped us communicate Jacob’s message throughout all these years. Thank you, and please don’t stop sharing these messages.

Thank you for helping us climb to a cure.

Jeff and Ellen.